Here some suggested organisations that offer expert advice on SN.
ZOMBIE THREAD ALERT: This thread hasn't been posted on for a while.
Fuck fuck and FUCKITYFUCKITYFUCK!!
Got 21mo DS3's Paed report done on his speech delay/regression and his allergies.
Here are a few excerpts : "disruptive" "his attention span fluctuates, if he is interested in a particular activity he can concentrate for far longer than is age appropriate but in general he is very easily distracted and generally keeps moving from one activity to another and from one part of the room to another"
"He shows eye contact and some interaction with parents but does not interact appropriately with unfamiliar faces or make eye contact. In fact he actively avoids eye contact with unfamiliar people"
"XXXX's speech is delayed; he can hardly say one or two words. This is a clear regression from his one year check with the HV"
"Height could not be measured as XXXX would not stand still"
"Schedule of growing skills could not be performed properly as he was constantly fidgety and restless and could not be engaged in any of the various activities that are part of the Schedule of growing skills"
And in summation : "Regarding XXXX's Hyperactivity, there are gross concerns. Presently he is too young for assessment regarding ADHD but this needs to be kept in mind and perhaps he will need further assessment if there are still concerns."
He has ASD and ADHD, doesn't he?
Isn't two out of four that are already dxd with ASD/HFA ENOUGH??!!
I so so so so so wanted to be wrong. I have never wanted to be wrong so much in my life. But I'm not wrong, am I?
I wasn't even there about the hyperactivity, hasn't told anyone medical because I knew he was too young to be assessed. We were there about the speech and the allergies.
And if it is that obvious to the Paed, who had no idea that I had those concerns, then it is bleeding obvious, isn't it?
Plan if action?
1) Referral to CADU (Child Assessment and Development Unit) for assessment.
2) Referral to SALT - already have my first appointment despite the current 18mo waiting list (!)
3) Referral to Physio, in view of strong family history of Hypermobility, and although he is actively mobile and runs around, he can be very clumsy, as witnessed.
4) Section 332 notification has been made to Educational Psychologist
*5) Blood investigations including Full Blood Count, urea electrolytes, Liver enzymes, Serum CK, Blood Glucose, Iron profile, Thyroid profile, Plasma amino acids and chromosome studies for Fragile X syndrome
and Microarray. Urine will also be requested for amino acids and organic acids.*
6) XXXX will be reviewed in the CADU.
Wtf is number 4? Not come across a 'section 332 notification to the EP' before. And why an EP at 21mo? Especially in an area where you can't get an EP visit for a 14yo, or a 9yo for bloody love nor money?! New one on me. Any explanations?
And as for number 5, the only one that makes sense to me is testing for Fragile X. Which will come back negative, same as DD's test for it, and DS2's test for it. Can anyone explain the reasoning behind the rest of the things they want to test his blood and pee for?
And just to hold my hand.
He had his anaphylaxis allergies fully dxd on Wed by skin prickly tests on Wed too. Then this report through the door today.
Skin prickly tests, he went into anaphylaxis. From the skin prick tests. To CMP. And Nuts. And 'moderately' reacts (I.e. bad but stops short of ana) to soy. He's so bad that the local Paed allergist is washing his hands of him after just one appointment and sending him to the Eveline in St.Thomas's in London.
Because another hospital added to the 8 I visit already every year, about 50 visits a year between 3 of us currently, was JUST what I needed, right?!
I wanted to be fucking WRONG this time.
You don't need those kind of politics on top of what you already have to deal with, why on earth can't people just back off and behave like grown ups. Grr.
Then again, I guess I could empathise, I've had people nice to my face, tell people behind my back I am not a fit parent for my children. People can't help their silly selves.
And perhaps I should be all wise and patient and think, well at least they only have these piddling things to occupy them, at least they don't have the holy hell that is my life sometimes. But actually I just want to rip out their tongue for ever suggesting such a thing.
You have a lot to deal with, you are being given the SS, DLA LEA runaround.
They tried this with me, I have three who have autism am a widow and have a neuro disorder severe allergies and a knackered back.
When my DH was terminal we got very little support.
Making a complaint about SS and getting our MP Involved did the trick, full care package and some respite.
I was told no one respite couple can be expected to meet the needs of more than TWO children with a disability.
Please do contact me if you think it would help, I'm happy to pass on anything that could be of use.
DS1 is too young to have fb. So it is just her stalking my fb. But I'm not going to let it get to me too much, just be a bit more guarded with who I talk to.
It's just difficult when you've had a hard day, and someone asks how you are...
Tbh, she's more if an NM person, I doubt she could find me on here.
I'll start a new thread then. I guess I've been on here so long that I forget that long threads can put off newbies!
Dont waste headspace on this. Really. She's probably hacked someone's FB to get a look at your info. Maybe even ds1's. Or she's asked a few 'innocent questions' from someone too naive to realise she was planning a poisonous moment. Or heard some RL gossip via the estate. Or she might be on MN.
She might well even done this on purpose knowing it'll make you suspicious of all the joint friends. Falling out with people, not trusting, being isolated and feeling bullied... Don't fall for it.
Come on, start a new thread. You'll get way better advice than mine with one that newbies can actually read through. And if nasty woman is stalking you on mumsnet, she'll have to wade through loads of threads to keep tabs and might even learn something.
And now I'm getting messages on fb telling me I'm a liar making things up about my DC's, and that I'm sick in the head.
Messages are probably from my DS1's dad's partner, who is, well, a nasty bitch. DS1 no longer goes to their house because she grabbed DS1's arm and bruised it, and raised her hand to hit him, back in August.
It means that someone who is meant to be my friend is passing things along to her. So now because I don't know who is telling her what is going on with my life, I daren't speak to anyone in RL about it in case I get nasty messages again.
I need this like a hole in the head - can't the bitch just leave me alone? I don't go near her, I don't talk to her, I don't get drawn in with her. Why can't she just do the same with me?
It doesn't help that the majority of my friends were friends that I had when I was with DS1's dad, and therefore they are still friendly with both of us. I've never wanted them to 'take sides' in anything, but she seems to insist upon it.
Since DS1 stopped going round there, I have started to see who my real friends are, the ones who stay friends with all of us, without stirring. But to know that there IS someone that is, well, it means I don't know who the hell I can talk to.
I don't know, I shouldn't let it get to me, but when it's being done anonymously, it just makes it worse. If you want to say something nasty, the least you could do is have the balls to do it under your real name and not hide behind a pseudonym.
Ugh. I hate this. I know I'm not 'sick in the head', my DC's have documented issues, two have been under the developmental Paed since 3mo, they have been through speech therapy, they have been through Physio & OT, ENT, Audiology, Proprioception clinic, cardiac consultant with my DD, still under the school doctors, DD still on the SEN register in Y10, DS2 should be but that's a fight I'm yet to tackle
If people don't believe me, I shouldn't take it to heart, it's their problem. This many NHS consultants can't ALL be liars...
It's just easier said than done when you don't know exactly who it is that's either passing messages on to someone they know has a vendetta against you, or is joining in with it if that is the case.
Think you might get it free with alarm system (here anyway)
Ps suggest start a new thread, this ones getting a bit long and unwieldy
Ah, it's my mobile, I don't have a landline. BT want a £300 deposit from anyone in my street before they will let us have a landline. Yet we can see the exchange from our front doors.
couthy, if you ask adults with disabilities team to install a pendant/alert alarm system for you (so you or the dc could easily summon help for a fit) then that runs off the phone system. Then BT aren't allowed to simply cut you off.
I think they are only allowed to ban outgoing calls (except 999) when you have a severe disability and rely on the phone. This might have changed tho, but it used to be the case. Priority fault repair still exists, worth registering for.
Now my phone has been cut off, because I can't afford to pay the friffing bill. God knows when I can afford to get it put back on.
It never rains but it pours.
X-post. I'll message you my fb later, I need to get a chicken out of the oven. I'm doing lemon and ginger stir fry tonight, (no soy sauce!), using any leftovers for lunch tomorrow, then making stock from the carcass to make soup with.
Oh, my LA doesn't give a shiny shit if the parents are disabled wrt free transport - they keep telling me that I will have to pay a childminder to take them to school. How many childminders will be able to deal with a 5ft1 tall 10yo who more than likely has Aspergers and (much as I love him) can be utterly infuriating as he doesn't realise that he can't talk to adults the same way as he does people his age, AND an Autistic just-about 9yo that has so little road sense that he walks straight into the road if you aren't holding onto him, and is in such a world of his own that he doesn't even hear you calling him half the time. And even more to the point, how in the name of buggery fuck would I PAY for this mythical SN childminder?! Shirt buttons?!
I have to tell you how disgusted I am that there isn't more help available for you and your children. You make bloody sure when they re-assess you that you give them the full picture WHAM! right in their faces, because anything short of them being amazing and giving you whatsoever you need to cope is unacceptable in your circumstances.
Only a couple of weeks then until you get your assessment done, that's hopefully positive. Could I possibly be very brave and ask for you to message me your Facebook details at some point? If you use it. I may be able to offer you more support that way. If you would like. (Am shite at doing the whole friendly thing, sorry, trying not to sound stalkery or bossy, hope it's coming across)
Care Needs Assessment was done 4 years ago. Adult Social Care then proceeded to ignore the things that THEY said I needed ever since.
New Care Needs assessment for me being done on 5th December as my Charity lady kicked some SW butt because I still don't have my wet room that even SS said I needed 4 years ago.
I've been strip washing next to the sink for 8 years. I just want a proper shower.
Had not yet been asleep. Finally got to bed at 5am. Was up at 7am. Feel like shit tbh. How do I keep going? Red bull. It's either that or be asleep while DS3 is awake...hmm]
Children's services keeps hitting red tape, Rabbits. School fills in a CAF, sends it to the Children with Disabilities team. They CAN'T deal with it (apparently, but my Charity lady is trying to kick some serious arse right now) because I had prior Child Protection involvement over a decade ago (!).
The involvement was because I was still on the 'at risk' register when my DD was born (as I was only 16, you don't get taken off the 'at risk' register until you are 18), she went on there automatically. Yet my DS1, born just 4 years later, wasn't put on there.
But when the CAF gets sent to Child Protection, they come out, say that they have no concerns about how I'm looking after the DC's, and they close the case. yet again.
Transport - officially my LA measures the distance for free transport 'as the crow flies' rather than 'shortest safe walking route'. There is nearly a mile difference between the two figures here.
Basically, I'm 1.3 miles away by safe walking route from the school. To get free transport for the DC's, both in the juniors, I have to be over 3 miles away 'as the crow flies'.
They don't take into account the fact that the combination of having Hypermobility to the point where his joints often sublux (dislocate painfully), chronic asthma AND hypotonia means that my 9yo CANNOT walk to school AND cope with a full day of school - he either has an asthma attack, suffers pain from his joints subluxing, or falls asleep in class if he walks it.
Even my local MP is aghast by the LA's refusal to pay out on bus passes given his fully diagnosed disabilities, and the fact that I cannot drive (which the LA keep telling me to do, even AFTER I tell them I can't legally hold a driver's license...).
He tried 11 times in 5 years to apply for free transport on our behalf and still failed.
So no free transport here, unless he goes to a special school by taxi. Which he doesn't. Even though he should.
Nothing like re ablement here, the Charity lady that is helping me is the closest we have.
Need to compile a list of
moans about the teachers not following DD's IEP questions for DD's parents evening.
Why do your children not qualify for free transport Couthy?
I am in the process of applying due to my own disability making it impossible to safely accompany them to school walking. But there were lots of other ways to qualify in my county council's terms and conditions. Do you have a copy of yours?
How far along in the process of getting care are you? Assessment done or not? Have you had the children assessed also? I got Children's services to come do my own children's assessment to ensure that they got everything they needed at home, they've bumped me back to the school to do a Child Action Framework meeting, which means we do meetings with agencies and work out how best to achieve stuff, but it's something. They are also willing to back me and write letters to people regards the children's needs.
DLA is obviously bubbling away in the background there, is that for you and all three DCs? The Carers Allowance will also help. I'd cross my fingers but they hurt today.
Do you have a local service like START re-ablement? They can be referred to you and come help for six weeks with certain issues, like filling out forms and stuff. I'll find a link to my own local one to give you an idea.
Glad to hear that the allergic reaction is subsiding.
The news about the DLA& carers allowance sounds promising too.
You have done a lot more Christmas shopping than I have.
What I want to know is were you up this morning scarily early, or had you not been to sleep?
I do hope that things begin to calm down for you. I am in awe at your stamina and keeping going. I would be a crazed mess by now as I am awful when lacking sleep.
Finally. He has hydrocortisone cream for the hivey burny nappy rash, the GP has finally admitted DS3 has reflux (still) and has put him on gaviscon powders too. That I can't yet get into him.
I had my work focused interview, the lady there told me it was obvious I can't work AT ALL, and gave me three phone numbers, one for a DLA form for DS3, one for a Carer's Allowance form because of that, and one so that I can get my Social Fund loan repayments lowered.
DLA have my form and supporting letter, and have texted me (!) to tell me that I will have a decision within 8 weeks - which will be the 15th January.
Had DS3's second lot of bloods done today, it took them 3 goes, poor little love. First they tried his right foot but his vein collapsed, then they tried his right arm, again, the vein collapsed as soon as they got the needle in him, and finally they managed to get what they needed from his left foot. It was horrible.
But it's all done now. I've found out that the Microarray testing will take 3-6 months to come back, so I will hear about any chromosomal issues at some point between 30th Jan and 24th April next year.
So I guess I will get told when he next sees the developmental Paed on 24th April.
Lady from the Special Needs Sensory group has contacted me, even THEY aren't sure it will be a safe environment for DS3 because of the CMP allergy. She is having a meeting with her managers to discuss it, and she will get back to me before Friday. If even they can't keep him safe, then I'm screwed.
Local Charity Lady is coming out on 5th Dec to help me apply for my free bus pass - ok I'll still have to pay for a single ticket to GET them to school, but if I wait till 9.00 then I can do the rest of my journeys for free. Just wish I could get the sane for the DC's - DS1 & DS2's bus fares alone are £1.90 a day each, so I spend £19.00 a week just on bus fares for them. Currently mine is an extra £3.40 a day, adding an extra £17.00 to that.
So I currently pay £36 a week on bus fares alone, without including the times I need to pay more for taxis or extra buses (extra bus fare for DS1 & DS2 due to GP appt. after school).
Got DD's parents evening tonight, and need to think of how to get the teachers to actually DO what is written in her IEP, ask what I can do to help her bring her grades up, if D/E/F are grades at GCSE that mean she can do the college course she wants to do and I can afford to help her with.
Gah, RL is just too damn busy!!
On Thursday I need to get my next blood tests done. Oh, and apparently my cholesterol is SCARILY high - 6.5. So I now need to sort my diet
and sensory food issues try to get that back down to a more normal level.
Considering I didn't get a chance to put my jumper on until 4pm at the GP's surgery, and managed to grab breakfast at 5pm (!), that's going to be fun.
At least I have done half of my Christmas shopping online tonight, and DS2's birthday presents
thank you ex for letting me use your credit card so I can 'do' DS2's birthday too.
Just need to design and print his cinema invites, finish the Christmas shopping, compile a list of questions for DD's parents evening, do DS2's OT, do DS3's therapies, spend 15 minutes 1-2-1 with DS1, help DD with her textiles homework, help DS1 with his science experiment homework, cook dinner, put away my shopping delivery that's due between 10-12 tomorrow, scrub the kitchen, do some more washing and put away the clothes piled on my bedroom floor tomorrow. Quiet day then.
Could I have 48 hours in each day, please. I could do with some sleeeeeeeeeeep.
<<Looks irritatedly at WIDE awake, bouncy DS3 NOT being asleep, or even remotely sleepy.>>
How is your DS now? Is the reaction subsiding?
Every time he poos he is getting hives that then blister and turn into the worst nappy rash I have ever seen. It looks like he has been burnt by acid.
I can't even get a doctor's appointment for him, I'm waiting for a phone call from the GP. How a GP can tell what type of nappy rash it is, and therefore what cream to use, over the telephone, is bloody beyond me.
I'm changing him every hour day and night and slathering him in sudocrem. Since he had the reaction I have got through nearly 80 nappies trying to clear the rash, and the best part of an entire tub of sudocrem.
I've never seen anything like it. His poo isn't its normal consistency either, it's really runny.
He's in pain and I can't do anything else to help him.
Argh! DS2 doesn't eat latex FFS! I missed a bit of the sentence out. The other bit was meant to say "and bananas too."
I need to go back to bed!!
MNP - DS2 is allergic to Latex and says his mouth and inner ear itches when he eats it, he refuses almost all fruits except grapes and has done since he was weaned. I have a ? On Oral Allergy syndrome for him, but he's never been tested. All my other DC's love fruits and raw veg, he won't touch them says they make him itch. I just give him extra cooked veg!
DS3 seems ok with bananas though. Thank god! He only eats certain fruits, as I was warned to introduce them slowly due to his other allergies. He eats tinned mandarins, tinned pears, tinned peaches and bananas. He won't touch fresh apple, he gets a small rash from raspberries, I haven't trialled strawberries yet (was going to yesterday!). He's obviously allergic to pineapple. I have been told not to bother with kiwi till he's over 3 as DD and DS2 are both very allergic to it, as am I. He won't touch fresh peaches, nectarines or apricots.
He came up in a rash from plums.
It's just a case of adding each fruit in slowly, and leaving at least a few days if any reaction happens. I didn't feel confident enough with the severity of his allergies to start adding fruits back into his diet (we had to go back to a single food diet, adding in one thing at a time when he was 7mo) until he was over 16mo.
I have issues with fresh pineapple too, but am fine with tinned. Hence why I didn't think cooked tinned pineapple would be a problem, as me, DD and DS2 are all the same.
I know ALL of us have odd allergies, I'm worrying enough about the first time DS3 needs antibiotics, as both me and DS1 (my least 'allergic' child) are anaphylactic to penicillin and Amoxycillin.
It never rains but it pours, eh?!
I have read your thread with my mouth hanging open. I feel absolutely aghast at what you are going through, and amazed at the strength you have to be supporting me when you are going through what you are going through. Thank you. Just thanks so much. I really value your posts, I don't even dare to think I can be as helpful, but I've found your thread and I just had to say this.
So the list now stands at dairy, nut, soy, pineapple, probably kiwi, papaya and latex too.
I was going to trial strawberries tonight as well. I won't be doing THAT now! One reaction in a day is enough.
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